Strategic partner updates for October 2013

26 November 2013

Health and Social Care update from our work as Strategic Partner to the Department of Health, NHS England and Public Health England

This month’s update includes a report from the latest Strategic Partners meeting, reflections on Disability Rights UK’s events and workplan, and on how this will support local user-led membership organisations and finally news and insights on social care eligibility criteria, working with the Care Quality Commission (CQC), personal health budgets, peer support and The Light Touch Regime and Accessible EU Procurement for example.

Disability Rights UK presented on ‘taking a user-led approach to health and social care’. The main emphasis was on how commissioning resources could and should be tied in with people’s own informal support networks. Providers can kick-start this process by supporting the creation of new user-led organisations – see last month’s update. Please get in touch with Bernd.Sass@disabilityrightsuk.org should you be interested in pursuing any of this further.

Further news

Survey - do you want to let the Department of Health know what you think of the proposed changes to care and support eligibility criteria? If you are currently in receipt of social care services or are the informal carer of someone who is, this confidential survey is an opportunity to say what the regulations mean to you and/or the person you care for. The Department of Health is reviewing draft regulations about who will be eligible for care and support (under the Care Bill, which is due to become law in April 2015). Scope, one of the Voluntary Partnership organisations has collaborated with Opinium to host a survey for social care users and their carers as part of this review. Disability Rights UK will report the findings. The survey will close on13th November – go to https://www.opiniumresearch.com/R.aspx?a=4650

Care Quality Commission would like to hear about care as part of their review of dementia care CQC is the independent regulator of health and social care in England. They are inspecting hospitals and care homes in 22 local authority areas between November and January to check how well they care for people with dementia. They will be writing a national report about dementia care and whether people experience good care across the different services they have to use. CQC would like to hear the experiences of people with dementia and their families who have been admitted to an acute hospital from a care home and also those who have been discharged from hospital to a care home in the last year. They will use this information to help us decide if local services are providing good care. They are very keen to hear from people with dementia’s experiences of moving between these services, but also what it was like for the family or carer. We are interested in both emergency and non-emergency admissions to hospitals from care homes:

What was most important to you and your carer/family in your care as you moved between the hospital and the care home?

What made this a good experience?

What made it a poor experience?

What could have been improved?

You could also tell us:

Could the care home have provided any further care or support to avoid you going into hospital?

Did the hospital provide the support you needed as a person with dementia/or their carer during your stay in the hospital?

Could the hospital have provided any further care or support to enable you to go back to the care home as quickly and smoothly as possible?

Did you get the support you needed from GPs or other community services that you needed to help you stay at the care home or following a stay in hospital?

Please send any stories of your care to dementiafeedback@cqc.org.uk or ring 03000 616161 to speak to someone who can help you share your story. CQC are collecting your feedback up until the end of January 2014. It is helpful if CQC knows which care home, hospital or other services you are telling them about. They will not identify you or your family in our reports. But it is helpful to have your contact details in case CQC want to talk to you more about your experiences. Please share this request with other people you know who have dementia and their families in your area.

Disability Rights UK supporting CQC to inform key lines of enquiry around forthcoming inspections in all nine regions – partners sought! DRUK has agreed to help inform disabled people about the CQC and gather insights about what makes care safe, effective, caring, responsive and well-led. We are starting communication work in all nine regions using the CQC inspections of 19 NHS Trusts as a hook to engage people in conversations.

We are looking to identify patient groups and user-led organisations that want to work with us and CQC more closely and more regularly. For instance, we would like to share information at CQC's inspections and find out whether this is the sort of information people would like in those or other formats. Above all, CQC need to hear feedback and more regular evidence about how services are doing locally and how this evidence can lead to improvement, perhaps in some pilot areas. This is with a view to establish regional disability networks with direct influence on CQC inspections.

As a first step, we are keen to produce a few case studies about what a good service looks like from the perspective of people with different disabilities. In what ways is such a good service responsive to people? This would be a good way to engage with you to help us produce something concrete early on.

DRUK is looking for local partners to deliver this project potentially over a longer period of time, and we see this as an opportunity to refresh local or regional partnerships with our members and networks. Some small resource will be made available for this. Please get in touch with Bernd Sass, Bernd.Sass@disabilityrightsuk.org or 07906 521536.

Simon Stevens appointed as new Chief Executive of NHS England Simon Stevens has been announced as the new Chief Executive of NHS England. Simon, who has 26 years’ experience in healthcare management at frontline and national level both in England and internationally, will take over from Sir David Nicholson on 1 April 2014.

New legal ‘right to have’ a Personal Health Budget announced From October next year, thousands of people in receipt of Continuing Health Care funding will gain a new legal ‘right to have’ a Personal Health Budget. This marks an important step towards greater self-determination in the NHS. The announcement was quietly made by ministers in Parliament last week. Luke O’Shea, NHS England’s Head of Patient Participation, explains why a “quiet ministerial announcement” is so significant. To read more, go to: http://www.england.nhs.uk/2013/10/17/luke-oshea/

NHS England’s Chief Nursing Officer highlights compassionate care which Disability Rights UK is following up by lobbying for local and national infrastructure to deliver peer support at scale Responding to the NHS hospitals complaints system review published this week, Jane Cummings, The Chief Nursing Officer for England and NHS England said: “Our single most important purpose is to look after patients with compassionate care. That means delivering the best possible patient experience to every single patient, every single time.”

DRUK has started talks with the NHSE Nursing Directorate on using their ‘Compassion in Practice’ Strategy to create greater parity between medical and non-medical aspects of care. This will also mean building peer support and training up and coordinating registers of local peers. We are also working on creating a ‘right to peer support’ both locally through GPs and nationally through Choose & Book and its successor ‘e-referral system’.

Friends and Family Test extended across public services Francis Maude, Minister for the Cabinet Office, has announced the extension of the Friends and Family Test across the NHS and other public services.

The simple test – answering the question “Would you recommend this service to your friends and family?” – will be extended to all NHS services in England, including mental health services, community nursing, and outpatient appointments by the end of March 2015. The test will also be used to assess Jobcentre Plus services (learning from which will be incorporated into the next phase of the Work Programme), further education courses and all service providers of government’s flagship youth scheme National Citizen Service.

DRUK is supporting 18 local mental health provider sites to develop the FFT and other indicators as Patient-Reported Experience Measures (PREMs) alongside a well-being test and other indicators as Patient-Reported Outcome Measures (PROMs). This is with a view to linking payment of providers to them achieving minimum scores on these PROMs and PREMs.

Improving General Practice: A Call to Action and a Call for Evidence GPs see over one million people every working day, the average patient visits their doctor just over five times a year, and the demand for services across the system, including GP and wider primary care, continues to rise. There is a view that general practice wants and needs to transform the way it provides services to address these challenges and at the beginning of August NHS England launched Improving General Practice – A Call To Action (http://www.england.nhs.uk/ourwork/com-dev/igp-cta/) to help stimulate debate amongst GP practices, area teams, CCGs, health and wellbeing boards and other community partners as to how best to develop general practice services fit for the future. Their aim is to enable general practice to play an even stronger role at the heart of more integrated out-of-hospital services that deliver better health outcomes, more personalised care, excellent patient experience and the most efficient possible use of NHS resources. This forms part of the wider The NHS belongs to the people: a call to action (http://www.england.nhs.uk/2013/07/11/call-to-action/) that NHS England launched on 11 July 2013. There have been many projects within the voluntary and community sector over recent years that have looked at how general practice could be improved for different communities. Whilst we are aware of many of these, we know there will be many more that we are currently unaware of. We are therefore asking for your help in identifying evidence from around the country on how general practice might be improved, and especially any evidence that might help reduce health inequalities. Please could you let us know of any examples of good practice, research on how general practice could be improved etc. and send this to Bernd.Sass@disabilityrightsuk.org .

Transforming Participation in Health and Care: Guidance for CommissionersTransforming Participation in Health and Care has been developed by NHS England with a wide range of stakeholders and partners and its purpose is to support commissioners to improve individual and public participation and to better understand and respond to the needs of the communities they serve.

'Ending 15-minute care': Department of Health response Department of Health has responded to Leonard Cheshire Disability’s campaign about its report 'Ending 15-minute Care'. The report and campaign have effectively highlighted the problem of poor local authority commissioning practices. The Department of Health fully agrees that it is unrealistic to think that 15 minutes is enough time to help people who are older or who have a disability to do everyday things like wash, dress and get out of bed. It is not fair on those who need support and it is not fair on care workers. The report and the accompanying online campaign have been a valuable opportunity to spread this message, and encourage local authority commissioners to change the ways they operate. To find out more, go to: https://www.gov.uk/government/news/ending-15-minute-care-department-of-health-response

Get involved in the NHS Citizens Assembly From its inception, NHS England has looked at ways to put patient participation at the heart of its decision making. To continue this work, NHS England has held two development days on 22 and 23 October to begin establishing a Citizens’ Assembly. Get involved in the design, structure, function and governance of the Assembly. To find out more, go to: http://www.england.nhs.uk/2013/10/21/nhs-citiz-assem/

Winterbourne View Joint Improvement Programme Stocktake published On 17 October, the Local Government Association and NHS England published the ‘Stocktake of progress report’, designed to enable local areas to assess their progress against commitments in the Winterbourne View Concordat, share good practice and identify development needs. The report seeks to demonstrate that all local areas are actively and positively working on this agenda. For further information, go to: http://www.local.gov.uk/web/guest/adult-social-care/-/journal_content/56/10180/3912043/ARTICLE

The Light Touch Regime and Accessible EU Procurement NAVCA has published responses to two procurement consultations; the Cabinet Office consultation on making procurement more accessible to SMEs and a Cabinet Office Discussion Paper on the new “light touch regime” for health, social and other services which sits under the new EU Procurement Directives. NAVCA has long argued for fairer procurement processes for smaller organisations and both responses support Government proposals as they do signal an improvement but also stress that culture change is vital if new rules are to make a difference.

Procurement for services in the new “light touch” regime with a value below £750,000 Euros will not be covered by EU procurement (unless there is concrete evidence that a contract is of interest to bidders from other member states). NAVCA is co-ordinating an informal working group that examines what procurement should look like for these services. We’ve all complained of previous practice, so hopefully we will encounter some improvement.

October 2013

Health and Social Care update from our work as Strategic Partner to the Department of Health, NHS England and Public Health England

This month’s update includes a report from the latest Strategic Partners meeting, reflections on Disability Rights UK’s workplan and on how this will support local user-led membership organisations and finally news and insights on Healthwatch England, Commissioning Skills at NHS England, user involvement at the Care Quality Commission (CQC) and further programmes such as support for organisations developing a social impact bond.

Where is Disability Rights UK with its workplan as a strategic partner and how does this help our members and networks?

If a thing or two have changed in the last few decades, then it is greater awareness that people who use services have become partners in social care and health and are co-producers of health outcomes. The more someone is involved in social care and health the greater are his or her prospects for positive health outcomes. There is also a shift towards outcomes-based commissioning and away from NHS providers simply delivering activities for their payments. Yet, who defines these outcomes? How can we move away from pure assumptions of ‘what makes people feel better’ and instead ask people directly and work with them from start to finish? The Friends and Family Test can only form the beginning.

Commissioning needs not only to listen but to respond to people throughout the commissioning cycle rather than coming up with ready-made solutions run by a few select providers. Commissioning resources need to be tied in with community support. To this end, people must be engaged and seen and encouraged to exercise choices and pursue their own 'care pathways', and the professional’s role must be to pick up on that context and not vice versa. Building on ‘lived experience’ means supporting people to increasingly tap into their own informal support networks and those of their peers while choosing less intensive care and treatment options. Many Adult Social Care departments and Clinical Commissioning Groups do grasp the issues but do not know where to start. If one looks at mental health for example, important questions are ‘how can people be supported not to rely on ready-made services and empowered to make choices for themselves?’ ‘How can services pave the way for such empowerment to support people in sometimes difficult transitions from set service interventions to more innovative peer support?’ What are fair, comprehensive and viable transitions from block to spot contracts with a minimum of necessary double running costs?

Personal (health) budgets that can be pooled between people are key to all this transformation. ‘Pooling’ offers creative ways to build collective insights and empower the individual at every single turn even across more complex care pathways. Care and treatment must then align with and build on people’s own systems of self-directed support, eg in hospital admissions and at discharge. How come that we expect and do not question the existence of services that focus on ’re-ablement’ no matter how effective they are? Why is there almost consensus to ‘disable’ people beforehand just because self-directed support typically ends at the hospital entrance? If there is great empowerment, there would be no need for re-ablement. Take the example of Care Quality Commission inspections collecting data on how ‘caring’ and ‘responsive’ services are. It is great if items for data collection are co-produced with those who experience directly how ‘caring’ and ‘responsive’ services are. However, if people would be empowered to explore for themselves and make up their mind and to talk to each other and then to exchange views on the support they are experiencing, their peers could – over time - learn more to directly build on their recommendations when making choices between different types of support. Safeguarding should primarily have such a basis of empowering people to do things for themselves rather than having everything laid out for them. Who of the readers would deny that right for themselves? How can we be so ready to deny people that right who are vulnerable or have learning disabilities? Should our role not be to ensure that utmost support is given so that there is an equal level of choice and control?

Are we not all NHS patients and should therefore all have the same say? The supported choices under (pooled) personal budgets should be incorporated into mainstream commissioning plans and made available to everyone with health and social care needs. Alongside personal budgets, there should also be wider partnerships to influence, co-produce and shape positive health outcomes and improve independent living and quality of life (alongside integration and productivity gains). Such transformation needs a shared sense of what it is important to achieve and how to go about it between people who commission and use services. Lived experience is an enabler and not a barrier in this process. Those who do not have ill-health, injuries and (long-term) disability need to open up and understand those who do. Then new community initiatives can be set out and relevant and agreed and have real impact on people’s and whole communities’ health outcomes. If only enough people with ‘lived experience’ and seldom heard people can be engaged, then nothing stands in the way of community development that benefits everyone further down the line, where local needs, assets, preferences, aspirations, insights are all part of the mix to set priorities with the help of established methods such as ‘Working Together For Change’ and ‘Citizens Juries’ for example.

For the time being, there are deeply routed cultural barriers to personalisation and choice and control in social care and NHS – despite the case that positive health outcomes go back to lots of variables that are in the control of the person and not just social care and clinical procedures. The Francis report on the failings at Mid Staffordshire and the Winterbourne View reports have drawn our attention to the absence of people’s voice and peer support but there are not many suggestions for positive ways forward. So how can we bring on a hands-on devolution of power to people, stop all rhetoric and upscale such innovation at the same time? Our programme ‘user-driven commissioning’ has built on three stepping stones: Firstly, some people were supported to pool their personal budgets so that they could pursue shared interests - often for the first time in their lives. Secondly, a few projects went further and used the insights gained from the process to directly inform de- and re-commissioning. Thirdly, there were projects, which were most keen to develop peer support as a way of shaping the market and did so through user-led provider organisations (ULOs). As a result, a range of personal budget ‘pooling’ projects have begun to shift away from block contracts and put quality on a more equal footing with price within service level agreements, with peer support becoming a defined element to assess, specify and co-deliver improved access and discharge pathways in mental health for example. One ULO has been kick started by a charity provider consortium to provide peer support across care areas and to also quality check its provider funders. Now we are working on a replicable user led commissioning approach for people with personal budgets and 'franchise' spread model. Disability Rights UK, Shaping Our Lives and Change have made some further proposals and started working with Department of Health, Public Health England and NHS England, eg Patient Information Directorate and Commissioning Skills team. We also need your support with some of these proposals. These are the some of the areas we are exploring with partners:

Could there be a ‘right to peer support’ at diagnosis and crisis stages, meaning an automatic process by default to refer people to a peer who has travelled a similar path in the past and can share experiences? Process should be triggered at both GP level and nationally via Choose & Book, e-referral systems. This would bring different (treatment or support) options to life first-hand. There will be a need to build up and coordinate local bases of peers, patient leaders, etc.. – a substantial role for disabled peoples’ user-led organisations and patient groups.

Can we create new payments profiles that are linked to NHS providers achieving minimum scores on user quality ratings and patient-reported outcome/experience measures? Comprehensive measures would capture (changes in): service use (ease/speed of referrals, stepping up/down), social capital, employment, choice and control. This would create outwards accountability and radically improve the dynamics between services and people who use them. It is a learning process, and so at first we need to remove the gradient between staff and patients. Both patients and staff need to have access to similar training budgets to equip them for their role in assessing outcomes and experiences.

Enhancing access to good quality information for people across all protected characteristics, eg appointments via email, support via helplines as an alternative to digitalisation.

We are looking for charity providers to support them to help establish independent user-led organisations. Providers can kick-start peer support, and it is in their own interest. One such offspring is the ULO ‘Peer Support North East’ which not only sees 350 of their peers a month to support them across traditional service boundaries but also checks the services of its founders for quality and produces health audits: For the founder charity consortium, its long-term investment in peer support means building a feedback mechanism into their own services. As a result, providers will be better prepared for the demands of more personalised and flexible solutions from service users. Finally, providers can improve on efficiency as bottlenecks in the system are more easily spotted and more readily rectified. We are keen to spread this model as widely as possible and support charities and user projects in the process. With the National Housing Federation we have started a project to map and improve how handyperson services can be taken over by residents and how such enterprises can be joined up with wider community development. Please get in touch with Bernd.Sass@disabilityrightsuk.org if you can help us reach out to local provider charities. We can also provide you with some tweets to link to our project.